Long time

Sorry not to write for so long. I have been keeping up more with my Caringbridge site. http://www.caringbridge.org/visit/jennifermartin I'm sitting in the chemo chair right now getting my Avastin. Things are going pretty good. Have not had a seizure in quite some time. I have a MRI in a few weeks and hope that everything looks as good as it has been. I am so happy for the summer to finally be poking it's head around. I love the flowers and spending time outside. Finally! Now that my chemo has been lowered a bit my counts are not dropping as much so I have a little easier time between treatments.

For now I awate the MRI.

9 years and holding

It's been 9 years since my first surgery. OMG! 9 years!! I can't believe it! Nine years ago I though I would live 2 to 5 years and here I am. Whoo F-ing hoo!! It's amazing. I amaze myself at times. Like today. I got up and went to work, came home and went to kickboxing and now I am watching some TV. Yeah, hi, how many Brain Tumor patients can say THAT! I hope a lot ;) Love to you all on my anniversary.

No fun at the ER

I have a rash type thing going on on my legs that is actually petechiae. A symptom that my platelets are low. I noticed it at work yesterday and called my oncology nurse and she told me to head to the ER because I may need a transfusion. Holy SHIT! I headed out of work in a panic and tried to keep myself calm while I drove to the ER. This is the first time this has ever happened go me. Ugh! I called Todd and my family to let them know and my mom joined me in my 3.5 hour wait at the ER. Todd would be on his way in a flash if the situation was worse. Anyway... after all that, I waited for my blood levels and they sent me home with orders to repeat blood draw Wednesday. No transfusion. WTF? 3.5 hours. My doc was cute anyway.

Surprise for me

How do I say thank you for the most unselfish, unforgettable thing? I haven’t the slightest idea how.

April 6, an ordinary Sunday, Todd and I headed out to his parents house to have dinner with them. Nothing strange. Little did we know what was planned. As we left for dinner with my mother and father in law they mentioned that they had to stop at a function before we went to dinner. Todd and I didn’t think anything of it. We were still oblivious to the master plan. Bill drove us to Waldenwoods Golf Course and as we got out of the car I looked to my left thinking “that truck looks like my sister’s….. that van looks like Tim’s….” I didn’t have enough time to put together the coincidence before I turned the corner into the banquet hall and saw about 70 people yell “SURPRISE”! As I stood there in wonder and shock I heard my brother in law, Jason, talk on the microphone about how this is “your day”. I looked into the crowd and saw so many faces that I love; my family, my friends, my life. I saw people that have been with me since day one of my diagnosis. People who have been with me through the MRI’s, hair loss, nausea, and all of the downs. And, of course, now here to celebrate one of the best days of my life. As I went around saying hello to everyone and catching up with people I had not seen in years, I was having a great time. I thought what a great idea! My family and friends put on a benefit to raise money for brain tumor awareness in my honor. I was still oblivious!! We all sat down to a nice spaghetti dinner and had yummy cake and I got to talk to everyone again. Jason got back on the mic and made and announcement that made the whole night become clear. The benefit was for me and me only. I was presented with a check that will allow Todd and me to take a dream vacation. That was the second shock of the night! The night continued with door prizes and 50/50 drawings. We even danced to the great playlist Jason put together.

My sister in law planned the whole night! A night that my family and friends came together to give me a dream. A dream vacation to go to Ireland. I’ve been loosely planning the trip with my friend Klaudia. We had settled on a year and now it was time to save money. The money is no problem now. Through the kind hearts of the wonderful people in my life, we can now go. 2010 is the year!

Thank you everyone for what you have done for me and Todd. We will never forget the kindness expressed for us.

I could never ask for better people to be surrounded with in my life and through my journey. Most of all, I couldn’t ask for a better sister in law. Thank you so much Sandy for all you did. Thank you for being the one who made this all possible. I’ll never forget it.

Hit me again

I was at the Hospital yesterday getting my chemo. Today .. I am doing ok-ish. Just a little nausea so we will see how the weekend progresses. I have not lost my hair!! I did loose some from the radiation. So there is an area above my right ear that is bald but it can pretty much be covered by my longer hair. I'm pretty happy about not loosing it all especially since I will be in Florida in 3 weeks! Whoo hoo!! I'm ready for some sun and warmth and escape.

New Chemo time

WTF? Why do we allow our Drs to put this shit into our bodies? I've been on the verge of puking for 4 days now. I had my first treatment with the new stuff on Thursday and it wasn't too bad. Even Friday. So Todd and I took off up north. BAD mistake. Saturday was a different story. All I did was lay around and be miserable. Hell, I still am. I want to eat without the fear of vomit. That's all.

Trucking along

Treatment #6 - the final one is tomorrow. I made it! I am still holding onto my hair and also holding my breath that Thursday it doesn't fall out. It usually takes about 2 weeks. I kinda like my hair right now so I wouldn't mind it staying around. I got my daily anticonvulsant drug level upped and hopefully that will help with the seizures. I'm trucking along. 2/27 is getting very near and I have already started with a stomach ache. My nerves will be working overtime this next week. Maybe while I am at the clinic tomorrow I will go into the chemo room and see if anyone is on Carboplatin to see what they think of it. I need some Yoga. I also need some vacation. I get a joyful week off of work in a few weeks so that will be nice. Too bad it's without pay. Damn economy.

3 Today! WTF?

I have not had a seizure for WEEKS and now today.. 3. One early this am, one this afternoon and one literally just now. I had to wait till it was over to bitch about it. Damn. This radiosurgery better be working.

Met with oncologist today. He's putting me on Carboplatin and Avastin. I will start 2/27. Hope I don't yack my brains out like I used to on CPT11. That was the worst. I know I will be a wreck my first treatment but I will get through it. Just have to make sure the toilet is clean!

I feel fine today after my first radiation treatment. Hope to continue this way.

First Radiosurgery treatment

Here I am laying on the table. I wanted a picture of it. I can't see what it looks like so here I am. It kinds freaks me out to look at it. I mean, it looks like I could be being tortured at any minute. Actually it kinda was near the end. They had me strapped in that mask for an hour. My ass was asleep and the back of my head was developing marks from the mesh cup that my head lay in. My dad called me and showed up. He couldn't let his little girl do it alone (awwww). That was nice of him although I got to see him for about 5 minutes before I went back into the room. Ah well. It was nice. After the treatment I went to the waiting room to collect my dad and my mom was sitting there. Double surprise! Dad had to go but mom stayed for the doc appt. The doc wanted to see me so she went too. He explained to me that he wanted to do 6 treatments instead of 4. I'm not concerned. He knows what he is doing, right? So we went over some stuff that we had already been over but mom had some questions. I love the way he answered one of hers! She wanted to know what happens with re-growth - if there were to be any. The doc told her she should not worry about that. She should focus on what is happening now. I hope she heard him.

So the treatment was a snap. I laid there , got zapped and went home. I worked out - I actually did 2 classes and now I am home. I have to take my steroids and then I am in for some TV watching. The best part of my day? MY SISTER RETURNS HOME TOMORROW!!!!!!! YES! I can't wait to here her voice. It's been a long 2 weeks.

One more thing. I love this - my friend's son called me today to tell me he was thinking about me and hopes I get better soon. He's 8. How cute is that?

New journal

If you don't get enough of me here - try here!

http://www.caringbridge.org/visit/jennifermartin

Focus

One good thing - I still have a job. A job I have lost focus of because of the current information, layoffs and an oncoming cold. It's really hard to sit at your desk and be interested when the mind is a million thoughts away and you REALLY are not liking what you are tasked to do. Like I said, It's a really good thing I still have a job. Phew. For now anyway.

Tomorrow I start my radiosurgery, I'll get zapped 4 times. I had my mask made on Monday and had simulated radiation treatment. I will be laying on a table with a mask over my face that is attached to the table. It will keep me still while the radiation is administered. I'm a little frightened. Just that it is all starting again. There won't be any side effects for now. Doc says that the side effects that may happen will be stroke like. More likely I will have another reoccurrence before I experience radiation side effects. My side effects that i have had for the last week are nausea and fatigue from the stress. Oh and I think my left shoulder is up around my ear it is so tense. I am going to try to get a massage this weekend. Whoo hoo! Anyone???? Anyone???

There are so many people around me to support me. I love you all.

I'm going to try to take a pic of me laying on the table - I've never seen it. If it's not too horrifying I'll post it.

Numb

Well, I finished the second round of chemo - actually I was 2 pills short because of my wonderful memory I left the dang things in the fridge when we went away for the weekend.

I had a MRI today and the results are not the best. Shit. There are some bright specks on the scan. There is even a spot that is progressed into my brain. The other tumors have stayed on the surface of my brain. The docs have to meet with tumor board tomorrow night and they will all make their recommendations. I feel the spinning down the funnel feeling starting. There is a lot going on right now and I am going into shut down mode. Layoffs start this week at the office and yesterday morning we all got an email stating a mandatory 1 week off of work... UNpaid.

A girl needs a break. I'm taking a sleeping pill and heading to bed.

Shiver me everythings!

OMG My car registered -8 this morning on the way to work. Ugh and WTF? Detroit area was colder than Anchorage Alaska yesterday! Is that exciting? I think not.

Well, I did it to myself again. I can't sit still and pay attention. I've had a low grade fever for over a week and last weekend I went to kickboxing came home and went xcross country skiing and then as I pulled in the driveway I noticed fresh snowmobile tracks. Todd was out tooling around so I got ready and we went out. I made dinner after we got home and then collapsed at 10 with a 100.9 fever. Pay attention my body screams. Sunday I went skiing again and took my niece sledding. Again. Fever. Monday I was achy and lethargic all day at work but raced home to take a 45minute nap so I would be rested for kickboxing. Did that and came home almost in tears. I felt horrible. I was achy all over and just didn't fell well. Ok so I am listening now. I stayed home from work Tuesday and didn't go anywhere. Wednesday I went to work but not to the gym. I feel better! Getting rest really works! Imagine that.

Work announced layoffs again last Friday. My goodness I will be glad when this is over whether I am on the chopping block or not. Speaking of - lunch is over.

Happy 2009 already!

WOW! It's January already. I completed my first round of chemo with out any major happenings. The usual stomach issues and a little nausea was it. Thank goodness for that.

Todd and I had a wonderful holiday that we spent with family and friends.

I finally returned to work on Jan 5 for good - well until the next day off (Hooray for MLK).

I see Doc Anderson Friday and am not scheduled for tests until the end of the month. Until then...

PS on the "woman" issue. I finally stopped bleeding all together now (for about 3 months now) and am off the depo shot. It's been 6 months since my last shot and no period has come back. Love that but now I am also concerned. OBGYN took some hormone levels so hopefully all is ok. If it's not one thing it will surely be another.....

On again

I started chemo on December 8. The same day I went back to work. The week was hard to adjust waking up at 530 instead of 8 and living on 7.5 hours of sleep instead of 9. I was ready to put my head on my desk and take a 10 min nap more than once! I am taking Temador for chemo again. I took it in 2000 and 2003. I will be taking it in combination with Avastin. I was supposed to get my first infusion of Avastin on the 12th but the nurses and docs were leery of giving it to me so close to my nose surgery so we are waiting on that until January 2. I am having a little nausea with the Temador and defiantly some fatigue but as I said before I have had a big adjustment to my schedule. I didn't get too much time to adjust because I still had 5 days of vacation time left to use up before the end of the year. So I worked 7 (!!!) days and now I have 19 days off. How nice is that? My company shuts down between Christmas and New Year - that's why I get so much time off.

Today we got 10 inches of snow and Todd and I got out the old snowmobile and went wild! It was great! We had a blast. I can't wait to see how sore my arms will be tomorrow because it was so hard to steer in all this snow. I was a little hesitant about going but you know... you only live once, right? AND the helmet will protect my head and my nose. So I went for it. I even did a jump. Just like old days when me and my sister would take it out and ride behind the school about 20 years ago. I can't believe that thing still runs. I'm glad I went - no one tell my docs, OK?

Call it karma- about 10 minutes after we got home I had a seizure.

Stop already.

It doesn’t ever seem to stop. I have quit wondering why. When we started the conversations about my latest surgery the docs wanted to get rid of the tumor to be alleviate me of the seizures. Great! I thought as I placed my hands in theirs while I cried and they said this was the best option. I had my surgery and was seizure free for about 14 days and then I had one. Ok I thought. One well, with no schedule I seem to be having them more frequently. I had one yesterday night at about 7 pm and then today at 130 pm. I’ve been really tired this week from starting back to work. Could that be it? But what explains the ones while I was off and getting 9 hours of sleep and napping? How frustrating.

Breathe

As in I can Breathe now! I decided to have my nose fixed while I was off. The surgery was to straighten my deviated septum. The surgery was fine but the week after was torture. I had splints up my nose on both sides that looked like straws for a week. The nurse told me those were better because you can breathe through them. Humph! Don't think so. Maybe 20%. I still have about a week of healing and then will decided if the surgery was worth it. As for now... jury is still out.

Here is a picture of before:



The after will be soon.

I don't wanna!

I kinda just don't want to this year. Can we skip Christmas? I mean, skip all the things Christmas has become that has nothing to do with the holiday. Scrooge? ME?!?! I was going to sit down today and start addressing my what seems like an endless amount of holiday cards while I had a few moments but when I looked in the card drawer there is none. I usually buy the cards the year before so I don't have to think about it. And then the holiday letter. I love getting cards but I love getting updates on what happened to my (diatant) friends and family more. So I like to write one myself to all of them. Ohh... should I even bother?

It's over

Am I really ready to go back? Back to work. Back to normal? Start again? I can say that I am ready to move on - that's for sure. It's been a long time since October 14th. I've had a good recovery time. I saw a ton of people and most importantly, I got to see my husband every day. LOVED that. I actually talked him into making a snowman last Sunday when we in the middle of racking up a few more inches of snow. Aren't we cute? Too bad Mr. Frosty suffered the next day by some hoodlums knocking him over. Not to worry - I followed them and yelled at them. They'll be in jail before they are 18. Jerks! Todd rescued Mr. F and righted him. It was on our list to rebuild him a head. Well, he was dumped on his side again. Those little jerks were at it again. That time I didn't see them so one for them. Frosty (the torso) is now in the side yard safe and still waiting a head. Soon, Frosty, soon..



Anyway - I hope everyone had a good Thanksgiving and got to spend it with loved ones. I know I did.

I have to go and pack my lunch and make sure I have my computer bag ready for work tomorrow. I'm going to bed early but I don't know if that will help. Layoffs start this week at the office. Tomorrow will not be a fun homecoming.

% division

I went through all of my 5 pathology reports with one of my nurses the other day. I learned a ton of medical terms and most likely have now forgotten most of them. The thing I did learn is that my tumor cells are becoming more aggressive. It's not a shock. The time between surgeries has gotten shorter so put it together - the cells divide faster and hence the tumor grows faster. I started (back in 2000) with a division of 8-9%. Not too bad. Now in 2008 the division is 35%. I'm waiting to hear back from my oncologist on the prescription for Temodar and how to take it. I hope to start that soon. Why put it off any longer I guess. I need to step up and become a fighter again. Not a floater. It's been great - the time off but now I need to get back to it. I plan to get back to work on December 8. The week my company will start laying off my friends that I have known for the past 8 years. They have been through it all with me. All 5 surgeries.